Once you have decided to become your loved one's caregiver, there are several issues related to Alzheimer's disease you will need to tackle head-on and prepare for.
The role reversal will take some getting used to—it can be hard to remember that you are now in the role of parent and must take care of most things for them. Preparing for these three biggest issues can help smooth the transition to caregiver.
Alzheimer's Safety Issues
Creating a safe home environment for a person with Alzheimer's disease requires changes that would be made for any older person, but you should also consider any physical or mental disabilities he or she has that are unique to Alzheimer’s disease and try to plan ahead for future difficulties.
The environment should be suitable for the issues stemming from the disease, which include:
- Memory loss
- Confusion about where he or she is
- Confusion about how to get to or find a particular room
- Decreased judgment
- Tendency to wander
- Poor impulse control
- Changes in vision, hearing, depth perception
- Sensitivity to changes in temperature
When caring for someone with Alzheimer’s at home, you are providing a chance for them to remain in a familiar, comfortable environment where they can use their strengths and be encouraged to be as independent as possible for as long as possible. A safe, comfortable home can help a person with Alzheimer’s feel more relaxed and less overwhelmed. Focus on preventing accidents, wandering away from home and emotional upset.
Consult your doctor, a home healthcare specialist, or one of the many caregiving guides available at bookstores for specific information on how to create the safest possible home environment.
Alzheimer’s Healthcare Issues
As the primary caregiver, you will be called upon to make medical decisions for your loved one as the patient declines in cognitive capacity. It is important to understand their wishes for care and adhere to those wishes whenever possible. In the early stages of Alzheimer's disease, most patients can still discuss their wishes for their own care and help put together the necessary documents to ensure that their wishes are carried out.
First it is important to discuss the person’s wishes with them. It may be helpful to have another person present to act as witness. Here are the topics you should cover:
- Does the person have a Health Care Proxy—a person legally allowed to make medical decisions on their behalf?
- Is there a living will or medical power of attorney?
- What would the person's choices be regarding life support?
- Would the person want to stay at home or enter a facility?
Once your loved one's wishes have been established, it's a good idea to visit with a lawyer and prepare the necessary documents. You will need to have many of them notarized and make several copies for future use.
The legal and financial terms listed here may be unfamiliar to you and are provided for educational purposes only.
You may want to research these terms further to see if/how they apply to your particular situation. You should consider meeting with a legal or financial professional for their advice.
Living Will
A living will spells out a person's wishes about medical care in case he or she is physically unable to state those wishes.
Advance Directive
This document allows a person to name someone as a personal proxy with the authority, or right, to carry out the person's wishes, as outlined in the living will.
Do Not Resuscitate Order (DNR)
This document instructs medical personnel not to use CPR if the person’s heart stops beating.
Values History
This document explains a person's views on life and death and what he or she thinks is important. This can help the proxy or representative understand the person's wishes.
Alzheimer's Financial And Legal Issues
Unfortunately, it can be very expensive to care for a loved one with Alzheimer’s disease. Because it is a progressive disease, costs and needs will change over time, so it's best to be prepared for all scenarios. While insurance and Medicare may cover some of the costs, many families end up shouldering a lot of the out-of-pocket expenses.
The best way to combat the stress that comes with this responsibility is to be prepared. First, you should gather all of the patient’s existing expenses, assets and income and legal documents, including:
- Insurance Policies
- Wills
- Power of Attorney
- Bank and Investment Accounts
- Deeds and Mortgages
- Pension and Social Security
It may also be helpful to meet with a financial planner and discuss your own income and your loved one’s so that you can develop a financial strategy going forward. Spend some time researching government assistance and community support groups, and be sure to contact your loved one’s health insurance company and Medicare to see what types of costs they cover for Alzheimer's patients.
Addressing these financial issues will require you to get legal documents in order as well. The goal of your legal planning should be to decide on a course of action for healthcare and long-term care, make arrangements for the handling of finances and property and to name the person who will be making legal, financial and medical decisions on the patient’s behalf.
There are many legal tools that can help you and the person in your care now and in the future. Financial and legal planning is necessary and should be started early. Planning for the future should include looking at income tax issues, protecting existing assets, saving for the future and paying for care. Long-term planning will help you and your loved one feel more secure, no matter what the future brings.
Alzheimer's Financial and Legal Planning Tools to Explore
The legal and financial terms listed here may be unfamiliar to you and are provided for educational purposes only.
You may want to research these terms further to see if/how they apply to your particular situation. You should consider meeting with a legal or financial professional for their advice.
Will—a legal document that spells out how money and property are to be distributed after death.
Living Trust—a legal document that names someone (a trustee) to manage a person’s finances or assets.
Power of Attorney—a document that names someone to make decisions about money and property for a person who is unable to make those decisions.
Representative Payee—someone named by the Social Security Administration to manage a person's Social Security benefits when that person is unable to look after his or her own money and bill paying.
Conservatorship—a legal proceeding in which the court names an individual to handle another’s finances when that person becomes unable to do so.
From The Comfort of Home™ for Alzheimer's Disease: A Guide for Caregivers,CareTrust Publications © 2008.
